Son with Fibromyalgia

Cara - posted on 10/27/2012

My son is now 12 and was diagnosed at 10 years old. He was (hopefully will be again) very athletic... competitive swimmer, played soccer, hiked, backpacked, camped, etc. Coping as a parent is hard. We work with a pain clinic which isn't stellar in our state... but we try to stick to guidelines they gave us. We don't ask him how he is feeling or what his pain level is anymore. If he isn't feeling well, we can tell or he will tell us. We try to do what we can to keep the topic at bay. If he is mentally distracted with conversation, a funny movie, a friend coming over, etc. it helps. We try to keep him moving (which is so much harder than it sounds). Regular acupuncture and massage help. Keeping him eating whole foods and limiting sugar and processed foods. We have a 504 plan for school which makes accommodations for him at school. It is a full-time job keeping on top of his needs. We are fed up with trying him on meds that don't even work. He does better with fewer side effects when we stick to rest, healthy eating, light exercise, laughing, cuddling, and acupuncture and massage. It's been a long road. We still grieve the loss of quality of life everyday. He misses out on a lot. But at this point our focus has to be on teaching him self-care so when he is a young adult we can feel confident that he will know how to manage his condition the best he can if we are not around.

Stacey - posted on 09/14/2012

Wow - years later - well I have fibromyalgia 4yrs diagnosed, and my son, who just turned 12 will be diagnosed shortly. I can not find much on young athletic boys that have fibromyalgia - and I sure do want to do all I can for my son - he knows a bit, but still does not know the full extent of what he is in for - and it breaks my heart, and makes me cry to think of it - its been off and on for him 4 years as well. But the last 6 months - there is no doubt, not even to his pediatrician - so on we go. I really want to meet others that have kids to learn how to cope with your child having it - its hard because i have it too, badly, and we have some comorbid things going on - like he has mild tourettes, and last night told me of OCD like things, and I have ADHD, PTSD, and we both have sensory processing disorder - especially in the last 4 yrs. My son used to match 100% PANDAS - but that was about 3 yrs ago - and now he has more chronic issues. A CHOP neuro still did not believe PANDAS existed. I saw my son all but pain symptoms disappear after diagn of strep this past march - and 2 wks of antibiotics - its so typical - but the pain was ramped at roughly the same time. Its so confusing, and all so symptomatically overlaps. With the exception of FM pain. UGH

Michelle - posted on 03/27/2010

After a year of no pain and nine months of no medication my son's fibro came back with a vengence. The last 2 weeks and been hell for him as he has also been fighting asthmatic bronchitis and the constant coughing is making his body hurt uncontrolablly without the use of heavy narcotic pain meds. How are ya'll kids doing?

Michelle - posted on 11/27/2009

My son was diagnosed a little over 3 yrs ago at the age of 10. With lots of patience and trial and error with a pediatric rhumatologist he has been relatively pain free for almost a year and off most med for the last 6 months. If you primary doctor is not accepting a diagnoses of Fibro get a new doctor

Kimberly - posted on 03/02/2009

My daughter was diagnosed when she was 11 years old.  At first I thought she may have tourettes because of the muscle jerks she was having.  But after almost a year of tests for other diseases, the neurologist diagnosed her with Fibro...sad thing is the family doctor does not believe in this disease and will not help her medically at all.  Fibro has had a bad reputaation and a bad rap, but I do know that it is an actual illness and these people afflicted need help in advocating for awareness in the community and medical areas.